Monday, April 18, 2011

Countdown 3...2...1

We were discharged from the hospital in time to enjoy the tailend of the weekend, thank God.  We caught up on some sleep, and we're ready to tackle our last week of radiation.  We have three more days, and we are already in the waiting room ready to finish with day one.  This is Ty waiting patiently in his stroller for his "teetmee" (treatment).  I use the word patiently with much poetic license, because I'm sure most of the people that are sharing this waiting room would think the opposite, but I have seen much worse :)


There's a lot of emotions going on inside that little head of his, and he just doesn't know how to express himself beyond crying out.  Not to mention how funky all of his meds must make him feel.  He is still on a low dose of steroids, causing his "roid rage" to kick in several times a day.  I've weened him from 10 milligrams of morphine every six hours (that's the largest dose he has EVER been prescribed) down to .5 milligrams over the course of the last two weeks, so he may be having some withdrawal issues.  And, due to the misfortunes he faced over the course of the weekends, the team is playing around with his antibiotics again.  So, it can be frustrating at times when I can't figure out what is causing him to cry so much, or act out.  On top of everything, I can only imagine how scared and insecure he still feels when we are dragged in and out of the hospital so much.  And, how frustrating it must for him to be feeling better, but still unable to do the things he wants to do physically. 

Ty often says "I don't know what's wong wit me" and I try to explain to him that he is feeling this way for a lot of reasons, but that the most important thing to focus on is that he is beating the cancer up and getting bedda.  He really is improving with every single day.  I wish you all could have seen how much he ate yesterday.  He was a force to be reckoned with :)  He is even switching hands to feed himself, using his strong arm to pull his weaker hand up to his mouth.  He is working it!!

11 comments:

  1. It must be so frustrating for the little guy. I am in total awe of him and your family, you are all to brave in the face of cancer. I think of Ty often and wonder how his day is going. I am always hopeful that he's having more ups than downs. I know he will get better with each passing day, I have such a good feeling about him. I wish I could give him a big hug when he's not happy, as I would do with my own son but since I can't I am wishing and praying for him to be healed with all my might.
    From Canada with love

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  2. Praying that his last week of radiation is a success! You are truly an inspiration. Go Ty Go!

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  3. I just got a chance to read your updates from the weekend--- Wow, sorry all that took place, but GLAD y'all are on the countdown for the radiation!!

    Ty looks so sweet in the pic above. He just seems to take it all in stride and continually smiles! :) Gotta love him!!

    Hoping for a GREAT week for y'all,
    Jan
    Georgia

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  4. 2 and 1 I am sure by now :) GOOOOO TYYYYY!!!!

    Awww, little man is tearing up some food! Me too buddy :) Isn't is funny how what we all might think are the small things are really huge?

    I have been thinking of you all weekend, nothing new:) Can't wait for you to be past these two days and able to get on with your life!

    Love ya Sweet Baby Boy!!
    Mary E. King and the rest of the King family

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  5. Remember when this all first went down, the doctor gave you the marathon analogy. It looks like you are well on your way to finishing another leg of the journey! I am sending Super Ty lots of super support, prayers and love!!!! Miss you Cyn and thinking about you lots!!! XOXOXO, Juliet

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  6. I met my first make-a-wish child last week; a 15 yr old boy from Israel who has medulloblastoma...when I asked him what his greatest desire was he replied, "I just want my health". If that could be wrapped up in a nice little box I would have handed it to him right there and sent one off to Ty as well. It absolutely breaks my heart for kids to have to try to understand something that adults still don't understand. I am praying for Ty and your family. Although I can't send health, I would love to send a little "happy". Can anyone reading provide an address?

    Thanks!

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  7. What an amazing little boy. He breaks my heart everytime I read about him but he still makes me smile. I pray for Ty and your family often. I hope things continue to get better and those antibiotics are sorted out!

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  8. Your posts bring tears..but I always recognize the tears of hope that stream down my face because it exists and is alive and well in Ty.
    You are an amazing person and one that surely stands out from the rest. Ty is amazing by genes and example- stay strong and keep the faith. Your positivity, strength and determination have already affected this situation in such a positive way. I said this to Deb...with every word, action and living being of your soul you are keeping the lid open on hope and Ty's future- you are changing the course of this disease for your son. Thank God he has you, of course my first thought is to wish he never had to endure a second of this.
    With that said..I know that what you need will come your way. I believe that with all that I have.
    Ty- as soon as the "spring" weather prevails..enjoy those rocket balloons with Aunt Deb and Gaga. All of our cheers are for you.

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  9. I'm glad he is getting bedda every day and getting off some meds. He looks great. Keep up the ass-kicking like Barack Obama.

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  10. Yay!!!! Go Team TY!! Two more days!!! Prayers, love and hope!!!!

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  11. Cindy,

    I have been catching up over the past few days, but have been unable to post! I am so happy that Ty is feeling bedda :) but sorry about what you guys are going through with his medications. It must be so frustrating for you guys!

    Ty is such a brave little boy, I still can't believe it! He amazes me everyday! I cant wait for your post that says Ty is Cancer free!

    I think about you guys everyday! Wishing you the best the last few days of radiation!

    Team Ty :)

    Joy Marielle
    Baltimore, MD

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